Abnormal Life

My dear, sweet cousin was asking questions last night about what autism looks like from a very clinical standpoint--how severity of condition is determined, what autistic adults are like, how I feel about having an autistic son, things of that nature.

I can obviously not speak for every parent that has a special needs child, but for the most part (unless you catch them on a very bad day):

We are happy to answer questions.

I'm not sure if they are afraid of prying or being insensitive, if they will appear foolish for not knowing, or that it might be inappropriate, but for whatever reason, people in general are interested but nervous that they are going to offend us.

It is okay to be curious!

Someone along the way, society as a whole were encouraged to not ask questions. Better to stay silent and all that.

But for me personally, and for almost all the other parents that I have encountered, go ahead and ask. It is not only okay, it is kind of touching--you care enough to learn more. You are thinking. We want people asking questions because the more that know about my child, the less excuses I have to make to those ignorant few, the less apologies I have to make for behavior that requires no apology, and certainly no shame on my part.

I do feel shame, however. The longer I go, the more callous I become to the judgment of strangers. If singing Billy Joel's "The Longest Time" quite loudly at Walmart keeps Gabriel focused on me instead of how horrible the whole grocery shopping experience is (don't worry, buddy--I am right there with you), then that is what I am going to do. Most people understand, and nuts to the ones that don't.

It is hard sometimes, though. Specifically, I feel so ashamed when my vigilance lapsed for a second and something unpleasant or unsafe happened that I knew I could have prevented. If only I hadn't been...catching up with a friend, paying attention to another child, drinking my coffee, trying to do... really anything else.

That's the sting there, isn't it? Having an autistic child is never looking away.

It's like when your baby is just starting to toddle around--the world is full of dangers you are painfully aware of and even a moment of inattentiveness, and they are jamming toys into electrical outlets and swallowing coins and conceiving a hundred different ways to cause themselves bodily harm in the name of exploration. A kid on the spectrum, you sorta feel like they never grow out of that phase.

Don't get me wrong: I am not looking for sympathy. Often, I think people expect...maybe that I am disappointed with my son not being "normal".

(Aside here: in the world of ASD, we don't use the term "normal" because it implies that my child is not, in fact, normal. The appropriate term is "neurotypical" because it specifically conveys the distinction--my son's brain developed structurally and functionally in a way that is different than most children's do.)

I am not sad. Does not offend me--you can ask. No, I am not sad. We all have our struggles, and this is what Gabriel's look like. I like Gabriel. I think he's neat.

Would it make my life easier if he was not autistic?

That is a hard question. For one thing...not actually sure myself. I had three c-sections and have never gone into labor, so I can't tell you much about natural delivery. It is the same principle. About my life and my struggles, I can tell you a great deal; but I don't know what it looks like from individual perspectives, in other families.

Personally, I do not think it is easier to have neurotypical children, or harder to have autistic children. Difficulty is determined by personal thresholds--what you can handle, what you cannot, what makes you sad/mad/frustrated/stressed/miserable. There are parents out there with a severe aversion to fecal matter. God help me if I had that problem because raising kids is like 90% other people's crap.

That is my personal view point though. Please don't go up to a mother with a special needs child with the impression that she is not struggling. I guarantee you that she is struggling. Take my words to mean: you don't know how people are coping, so don't bring any preconceived notions. Don't judge her...but you don't need to pity her either.

The next post, I will actually answer some of the most common questions I get so that if you are still feeling some apprehension over speaking up, you can get some answers.

If you have any thing you have specifically been wondering, reply and I will include that next time.

Until then!